hi glad they figured it out!! and me to- im starting gilenya this thursday, have been and still on copaxone- its im sure slowed it down, and holding my own- a few set backs, but still hanging on! lets compare notes on this gilenya -on that thread thats started, theres a few thats already started it!!
Hapbear,
Thank you, glad to know more. Like Sarah says, you are one of only a few on Gilenya here on the forum. I'm going to bump up two posts for you to respond to. One is a list of members who are diagnosed, and the other is a Gilenya user post. Add your info there too. It's our tracker of sorts
You'll not have to worry about us rushing you around, hahah but seriously, least that doctor knew what he was looking at and put you on the disease treatment path.
-shell
Hi and welcome to our great forum. I am sorry to learn of your dx but sometimes is is easier knowing what one is dealing with than living in limboland where many of our members stay for some time.
It is encouraging that you have been put on treatment so quickly and there are only a few other members on the forum who are on Gilenya so I am sure folks will be interested to kow how you get on with it, as it is such a new drug. I am on an oral drug trial in Uk and the drug I am on is supposed to be similar to Gilenya and I am getting on fine with it. Presumably you were screened and checked out carefully the day you first took it?
Anyhow I am glad that you have found our site and feel free to ask anything that is on your mind. There is some great information to be found in the health pages (top right hand corner) and many very knowledgeable people who will be happy to help you if they can offering information,empathy and understanding.
Best wishes
Sarah
Thank you for your reply it is good to have ppl who are going thru or have gone thru what I am only beginning.
I have had sever headaches since I was 20 but no doctor ever really paid any attention to them and always gave me useless drugs. Over time I just learned to live with it.
A year ago I went to a Brain doc and she started tests but than said it was nothing serious.
Than I had a sever emergency room type headache and was sent to this new Dr. Thank the gods he immediately ran tests and MRIs. So now I have a reason for all the pains and other problems.
Now it is onward with learning the ways to live with the DX and find a way to have a better life.
Thank you for being so helpful.
Today is a new day and I am determined to be positive and do whatever it takes to stay that way Hapbear
Thx for the come back. My Dr. has started me on Gilenya. He also has me taking Topomax for my migraines. He seems to be a good Dr. but is always in a hurry to get thru our appt. I leave feeling like I have more questions than I got answers :)
It is easier to start dealing with this now that I have found a place where ppl know answers that I need. Thank you very much Hapbear
Hi Hapbear,
Welcome to the forum. Sorry for your dx, but glad you know what it is. Alex gave you all you need where meds are concerned. Disease modifying drugs treat the disease, but don't necessarily make you feel better and then there are those meds that treat your symptoms.
Once controlled, each help you live your life in a manner that is bearable. How long had you been seeking diagnosis? How are you feeling now?
Hope your able to share your story a bit with us - if you feel comfortable to. You'll find lots of support and info here with us.
Thanks for joining us!
-Shell
Then there are a whole host of drugs for symptoms from cognitive, depression, muscle spasms, nerve pain, incontinence, etc.
Everyone with MS is different so you and your Doctor have to tailor a plan to you. Sometimes you have to try different things.
I for example started out on Copaxone a daily injection to slow progression. I take medications for my mood and sleeping. I take muscle relaxants and medicine for nerve pain. I tried Adderall for cognitive but it made me to edgy.
With everything you do a benefit/risk analysis because of possible side effects.
Alex